Friday, September 08, 2006

Illness, Impairment and Disability

Following a discussion on Alas, A Blog (which took many twists and turns), Imfunnytoo wrote a bit about her own differentiation between illness and impairment. I have alluded to my own attitude towards this before when writing about the Social Model of Disability, but this is kind of how it goes for me:

Illness

My illness is something which is medically amiss. In my own case, I am ill in quite a classical sense; I get feverish, my lymph nodes swell up, I even have a sore throat very much of the time. But the main constants of my illness are pain and cognitive problems.

These symptoms cause me suffering. My physical existence in often quite unpleasant. It is possible that this suffering could become unbearable. And I willingly take various steps necessary to reduce that suffering; symptomatic relief and management which may create the right conditions for remission to take place. If I could take a magic pill and be well, I would in an instant.

I do not consider my illness part of my identity, any more than the fact I have knobbly knees part of my identity (uh, they are just a bit knobbly). And whilst my illness has been the root cause of all number of experiences and adventures, few of them have been unique to this particular disease, this particular medical event. I'm not giving it any credit for anything, the git.

Impairment

My impairments are the functional limitations as a result my illness. For example, because of pain, I can only walk a short distance, I need to rest often, there are lots of things I cannot do without some sort of help and some things I cannot do at all.

I do not suffer because of my impairments. They frustrate me very much. However, I can interact with them in a far more positive way; I can find new ways of working around them, even reducing them with careful management.

Often people associate impairments with suffering because practical limitations are far more obvious than internal events. However, many people who have impairments but are not ill, especially when those impairments are congenital (e.g cerebral palsy, autism etc), will insist that there is no suffering associated with their conditions. It’s just the way they are and always have been.

I don't feel that way myself, but I have come to terms to some extent with the limitations I face, as opposed to the experience of illness, which remains an ongoing challenge. I hope that makes sense to someone other than myself.

My impairments are part of my identity, in so far as they dictate a great deal about the sort of life I live. My experiences and interactions with them have inevitably had an influence on the person I am. I share many of these experiences with other people who have various different physical and mental health conditions. Even if I got better tomorrow, these experiences would have a profound effect on the rest of my life.

Disability

Disability is the experience I have when my impairments interact with the world in which I live. The most obvious examples are always to do with physical obstacles; I can’t walk very far, I use a wheelchair, and the world has put steps in my way. But of course, it’s much more complicated than that; it is every way in which I face unnecessary social, practical or psychological obstacles.

Disability is the one thing on the list I can actively change, by examining my own attitudes and behaviour, making various practical changes and confronting the attitudes and behaviour of others.

Being disabled is part of my identity. It represents a political and social status which I have had thrust upon me like race or gender. I share this status and many accompanying experiences with all sorts of other disabled people, who have an enormous variety of impairments and life experiences.

I could attempt to deny it or else ignore it, but being the person I am, I attempt to address it, at least in my tiny wee small way.

It took me awhile, but yes, I happen to experience most of my impairments as defined above...It's not the impairment itself that mucks up one's life...It's the altered attitude of others, and even the now forbidding physical landscape of public places or homes, that can become adversarial that "disables" people. It's not the moment of impairment that begins "disability"...it's that first barrier, social or physical that marks the beginning of "disability"

The distinction between illness and impairment is one I haven't really thought about. My immediate feeling is that anything that can lead to some sort of political disadvantage (i.e. disability) is an impairment even if (like, say, cancer or depression) I would certainly be suffering and would certainly want to get better.

An illness is something, such as say the flu, where you wouldn't mind being denied the right to work because you could put your feet up and watch 'Deal or No Deal', and you know that it won't last very long.

The social model is not inconsistent with wanting to be cured - it just says that it is not the be all and end all. If I were dying of cancer, I like to think that I would have a good death, and not be clinging to false hopes.

In case a future doctor is reading this, I should make it clear that I would have every credible medical treatment going for cancer. However, I hope I wouldn't be so desperate as to go for the more wacky options.

Well indeed, and the Social Model can be effect the way we are treated, medically.

For example, lots of us sickie types find that medical staff are totally preoccupied with us regaining the ability to walk. Now, I would love to be able to walk a long distance, but I would much rather have the cognitive capacity to hold down even a part time job - who cares if I had to do it from a wheelchair?

Concepts of "normalisation" are not always consistent with what is most likely to improve quality of life.

I feel that illness is something temporary, something that, while nasty and resulting in temporary impairments, will go away. The flu, a stomach virus, a sprained ankle.

Disability is living with an illness that will not go away for various reasons.

That's my opinion.

Now, would I want my disability/illness/impairment to go away? If I were offered a magic pill to fix my genes, would I take it? I am not my disability. But it is a very important part of my life. Who I am today was formed over the years as I continued to live with my disability. Who would I be without it? What would I do? Would I continue to work from home as a writer? Would I lose my caustic/raw/real sense of humor? I don't know.

Life with a disability is extremely personal. The conversations in my head and my thought processes happen the way they do because of that close relationship. What would life be like without chronic pain? What is it like to wake up and just roll out of bed and get on with the day? What would I be like if I could do that?

Lorna was a technical writer for 15 yrs. One day she went into work and was told she, and fifty others, were laid off. Suddenly, she wasn't a technical writer any more. She didn't have to dress up. She didn't have to work with books and jargon all day. Her apartment went from neat-freak to borderline chaos within just a few weeks. Why? That order and precision that was her job was now gone. The order and precision that had leaked into the rest of her life no longer had the reason behind it.

What kind of person would she be today if she had not been laid off? Would she still be anal and precise and orderly? Or would she be the more relaxed and flexible person she is now?

What kind of person would I be today if I hadn't inherited EDS? Hadn't lived with chronic pain for the past 26 years?

"Disability is the experience I have when my impairments interact with the world in which I live."

Yes...

... but...

... I don't feel it is the responsibility of the world to rearrange itself around me as an individual. What would make something so, so, so much easier for me could make it awful for someone else - why should I take precedence?

An example could be cash machines. Put them at a level where I can use them from the scooter? Grand. Now my 6foot6 stepfather, who has enough difficulty stooping to use the standard ones, would have no hope in hell of managing.

I promise stairs were not put there to make it difficult for you or me or anyone else, although it sometimes feels that way. They were a solution to a problem. Most places here that have a doorstep are towards the river, where a house being raised a few inches stopped it getting flooded every year.

To be frank, I can understand people a hundred or so years ago weighing up the odds of their home or shop getting flooded and their stuff being irreparably damaged and the cost of replacement each year, versus the chance that someone on wheels might come visit and wanting to keep them comfy, and finding in favour of having a four-inch step.

I don't feel it is the responsibility of the world to rearrange itself around me as an individual.

No, me neither. When I talk about this definition of disability, I am always talking about unnecessary obstacles. And of course, I know folks did not put steps their just to spite me (although I have suspected it, at times ;-)), that was probably a careless turn of phrase.

So you're totally right about cash machines; if all cash machines were at our level, then we'd have many more disabled people in the world who had developed back pain and injury leaning down to get their cash out from even iaverage height - similarly with lots of other things.

However, inequality does exist and makes our lives that bit more limited than they actually absolutely have to be (and impairment does limit them for real). And that's what I mean by disability.

You do come across folks who feel that if the world was a fairer place, they wouldn't face any disadvantage. And certainly some people with certain impairments would achieve something pretty close to that. But clearly, you and I would still have difficulties in life even if the world was as fair and accomodating as it possibly could be... ni